I think I'm generally quite lucky that my mixed connective tissue disease is relatively under control. As I've had it explained to me, it's a mix of Lupus and Rheumatoid arthritis basically with the same general treatment as Lupus so I'm on 400mg plaquenil plus 400mg pregabalin for fibromyalgia and amlodipine for Reynaulds.
I have a full time job, and I even manage to do some things on evenings and cope with life generally with the support of my partner and my mum. But I'm still in pain. Every day.
It's mostly in my lower back - apparently it's my sacroilliac joints. Helpful to have a name for the bit that hurts but it doesn't help much. It's a stabbing pain, mostly on the right hand side when I'm sat down, when I walk, even a throbbing there when I lie down and try to sleep. Some pilates exercises are excruciating and the tutor has no idea why! Tramadol doesn't even touch it. Oramorph does at least send me to sleep nicely. But is this part of MCTD or something else? Anyone else got this very specific localised pain or is your pain more generalised? I get a bit of that too, and obviously the fatigue, but it's this pain which is driving me crazy.
My big question is: is this as good as it gets? How "healthy" can I ever expect to feel? Should I try further meds (if they'll let me...)? I fully understand that there isn't a cure and I'll always have the odd flare, but can you be painfree on a day to day basis?
I don't really know whether the plaquenil is "working" or whether to ask to try the next step you see! I have a six monthly check up with the rheumy in February, and I am planning the questions to ask her.
Newcastle upon Tyne